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Boston Screening for Jonathan


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  • Boston Screening for Jonathan

    Well we finally after much anticipation made it to the HCM clinic at NEMC. What a day we had! First thing, the 3 of us had our echos done and then the EKGs before noon. After anxiously waiting for the results for the better part of 3 hours, we finally met with Drs Maron, Link and Udelson. Much to our surprise the measurements that they recorded on Jonathan were a lot less than recorded during his first echo. They pointed out that the thicknesses that they saw were in the range of 1.1 to 1.2 cms, not the 1.6 and 1.7 previously recorded. His ejection fraction was 70%, the peak gradients were fine and nothing was unusual on his EKG. In addition, Angela's echo and mine were negative and everything looked perfectly fine.

    Could it be? We did talk a lot about Jonathan's unusually high blood pressure readings and high level of activity which had completely ceased almost a month ago. Bottom line is they want more data and really want to see the tape of the first echo. Best case scenario would be that those numbers were properly recorded and that his thickness diminished because of deconditioning because that would definitely rule HCM. Another thought would be that the way the echo was wwrong in the first place and that the measurements from NEMC are true in which case he still has a little bit of thickness but probably due to hypertension and exercise.

    Once again, I ask. Could it be? So now we were told to continue deconditioning, get that third reading in Canada at the end of the month, monitor the blood pressure and seek a specialist in pediatric hypertension.

    Once again, do I have reason to be optimistic? I'm still nervous and will be until it's final. 1.1 and 1.2 readings could also be early stages of HCM but so far we no history of this condition in our family. I'm afraid of being excited, but I have no reason to doubt Dr Udelson, Dr. Maron and Dr. Link. Do I? This board has been my inspiration the last 3 weeks so I need to know from you guys.

    Thanks a lot.


  • #2
    The three docs you saw are among the very best for HCM. They know as much as, or more than, anyone. I would trust them implicitely. Please let us know how Jonathan does on your third opinion. Hopefully it's athlete's heart. Or it could be caused somewhat by higher than normal blood pressure. Any way you look at it, you are taking all the right steps to figure this whole mess out. And no matter what the final diagnosis, remember that everything will be all right. HCM or not, you will still be together as a family. That's what counts the most. Take care of yourself and your family. I look forward to your update soon.


    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.


    • #3
      WOW - -I did not expect that... I would be surprised if the NEMC #'s were not correct...and I do believe there may be room for a little ray of light here...This is not something we see often but Yes misdiagnosis can happen.
      Before we call out the band and such lets wait till the next echo and check again.
      If it is clear at that point we can start to plan the party
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)


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